Today, May 1, is Blogging Against Disablism Day. I have been participating in this yearly event almost every year since 2007, though some of my posts are no longer online. Usually, I had a good idea of what I was going to write about well in advance. Not now. Having been busy with the #AtoZChallenge until yesterday, I didn’t have lots of time to think up a theme.

I am therefore going to start by giving a little background on my situation and will see where this goes. I am institutionalized and have been since 2007. I was living on my own in 2007 when I broke down mentally and had to be taken to the psychiatric hospital. Though the psychiatrist who admitted me did say we would need to find me a suited supported housing accommodation, she probably wouldn’t have predicted this to take long, let alone as long as it did and does take.

One problem which I encountered was that the staff who had been supporting me while living independently, particularly the team manager, were unwilling to have me go into supported housing at their organization. Their reason was the fact that I had meltdowns. Though I did not become physically aggressive towards people, I did scream and occasionally throw objects. The team manager at one point said: “You can”t be in society like this.”

Well, let me focus on this for my #BADD2015 post. You can’t be in society like this. What? You can’t be in society like this.

I am an informal patient. Always have been. With one exception during those early months on the accute ward, no-one has ever threatened involuntary commitment. There just wasn’t enough ground for it. Yet I couldn’t leave the institution because the supported housing agency decided that “you can’t be like this in society”.

I have become much more moderate on institutionalization over the years. I used to be firmly anti-institutionalization. Not anymore. It’s probably because I just don’t have the spoons to fight a system that won’t change for the better, and that is in fact moving towards more institutionalizations for severely disabled people.

The Long-Term Care Act, which regulates 24-hour care for the most vulnerable of disabled people (which for now includes me), says that people need to get care in an institution. There are exceptions, where a person can get the “full package at home”, but there are very strict guidelines for this.

I have always promoted good, community-based care. All the while, I’m still institutionalized, and I’ve become weary of advocating for my right to live in the community. After all, if no agency wants to support me, I’ll need plenty of spoons to fight them.

What annoys me more than people’s refusal to provide me with care, is the general idea behind the comment that you can’t be in society like this. I mean, it’s still discrimination if a care provider refuses a client who isn’t violent towards them, but it is less striking than to say that this person can’t be in society like this at all. This is like saying that this person is an outlaw.

The bottom line is no care provider has been found yet that is willing to take me on. I just yesterday had a meeting with a local care officer who decides on funding for care under the Community Assistance Act. The meeting went better than I expected. Because I’m now married, I’m planning on living with my husband rather than in supported housing. Then again, this team manager led the community care team, albeit in my old city. The blanket statement that you can’t be in society like this, presumably applies to community care too. Let’s just hope that the care agencies in my current town are less ableist.

There is a Dutch TV show where a high school class meets so many years after graduation. At the beginning of the show, a survey is discussed which the former students have been sent in preparation of the show. One of the regularly returning questions is whether life just happens or it’s a can of choices. Most people say it’s a can of choices, and at least cognitively I have to agree.

With the idea that life is a can of choices comes the possibility of looking back at life and wondering “What if”. If life just happens, this is meaningless. I mean, you can wonder what if life hadn’t dealt you the cards it dealt you, but it isn’t like you’d have any influence on it. This is easier sometimes. At least there’s no need for regrets or guilt. You could be angry with God, fate or whatever you believe in, but at least you’d know that you couldn’t have done anything different to make life not as it is now.

Then again, seeing life as a can of choices has the advantage of you being able to do something about your life. In this sense, the “What if”‘s can drive you to make different choices for the future.

I often wallow in wondering what if. What if I’d gone to university straight out of high school instead of to blindness rehab and independence training? What if I had not gone to my university city at all, or had gone into supported housing out of independence training. What if I hadn’t agreed to be hospitalized when I was in a crisis. What if I’d gone to any of the numerous supported housing options that have come up over the years instead of staying in the psychiatric institution. What if I hadn’t moved to my current institution and had stayed in the one in my university city? What if I’d moved into living with my husband when we rented our apartment? What if I’d actually finished the two Open University courses I didn’t complete? What if I hadn’t stopped blogging in 2011?

The thing is, I can look back to the past and regret the choices I’ve made, but at the time, I couldn’t look to the future to see what life would be like in 2014 if I made the choices I did or didn’t make. I can only try to make better choices now. Like, I did start up blogging again last year and continue to try Open University courses. This however will not be a guarantee for a better life. In this sense, life just happens to some extent.

Next year, my institution is going to undergo restructuring and all people with the lower levels of care will be kicked out. Lower levels of care in terms of institutional care, that is, so my level five (out of seven) care package does count. Exceptions are being made for those who’ve been completely institutionalized, so that they can’t live in the community, but that doesn’t include me having spent “only” seven years in an institution.

Honestly, I’m worried, but also determined. I was actually going to be referred to the Leo Kanner House workhome. The Leo Kanner House is an agency for autistic children and adults, specifically those without an intellectual disability. The workhome is their institutional, long-term placement for the more severely disabled adults, but firstly they have a waiting list a mile long (or two miles, or three), and secndly, my care package will likely by the time they have a place for me, not qualify me for care there anymore. Five out of seven sounded heavy duty when I first was assigned this care package in 2009, because I got there from three and that was already called something about “intensive support”. Currently, those with any care package below five are expected to live independently with outpatient and home supports. Fine with me, and I would’ve loved to attain this level of independence, but it’s not like the people in these care packages get the additional care that living on yur own requires versus living in a group home or institution.

As far as I’m aware, the people in care package five are allowed 24-hour care until the Long-Trm Care Act passes, which is only God knows when. 24-hour care, for clarity’s sake, means having someone available on call or at best in the group home or on the ward 24/7. There’s absolutely no-one who is allowed 24-hour supervision under the Dutch care system. Anyway, assuming that I’m entitled to group home care until whenever, but will be kicked out of the institution next year, I decided to E-mail my therapist to discuss referring me to supported housing.

There are two supported housing agencies in the area that cater to psychiatric patients – and autistics without an intellectual disability fall under the mental health system here. One of the agencies is a larger one which has existed for several decades. On their page about autism care, they only advertise a training home where autistics are trained to live independentlly and have to move out within a year. Not suitable for me, as 1. I already got enough training home experience to know I’m not going to learn much there, and 2. there’s no way I’m going to learn to live with only home supports in a year’s time, if ever. My husband and I are going to E-mail them anyway as, being a larger organization, they might be able to provide some kind of accommodation where we can live together with enough support for me.

The other organization is smaller, having only about six or seven group homes throughout the province, though mostly in my area. They have an autism-specialized group home in the nearest big city, in which they work together with the Leo Kanner House, but there are two drawbacks. Firstly, this group home is located down town, which means I won’t be able to travel safely even for just a walk around the block. The second drawback is that it is part training home too. Then there are two group homes in the countryside near a neighboring town from here. It is one of these group homes I’m asking ot go on the list for if I pass the intake interview. I will be calling this organization tomorrow after I speak to my therapist. Not sure how or when I’ll be contacting the larger supported housing agency.

One of the positives about moving into a group home is that my therapy falls under a different insurance scheme then. Under care packages for those in institutions, you’re only entitled to 50 minutes of “treatment” a week. That’s normal, you’d say. The thing is, “treatment” includes not only psychotherapy, but also art therapy, social work, consultations with a psychiatrist, etc. Basically anything other than staff support and day activities. Based on this, I get psychotherapy only once every other week at best (even though until recently I had no other forms of treatment, but oh well). Under group home care packaging, support will still be covered, but treatment isn’t covered. You’ll have to get that paid for through health insurance. That means, if I’m correct, that you can get more treatment paid for if your diagnosis warrants it, which mine does if I have to believe my therapist, who says that people with borderline personality disorder normally get at least a session a week. (Day activities are from 2015 on covered through the local government to make things complicated, so I have no clue how m uch I can get of those.)

I also asked my therapist to contact the Leo Kanner House about doing a consultation there. In all honesty, I’d like to get therapy there (they offer psychotherapy too) rather than at my local mental health agency, but as far as I know, getting both agencies involved is also possible if you have a dual diagnosis. As I wrote a few weeks ago, however, my diagnosis of autism is being questioned, so I’m asking my therapist to call my old institution to request my old records, too. I don’t mind having to answer a zillion questions about my autism for only about the fourth time (yay, I can do sarcasm, does that make me NT?). What I do mind is having to get my parents to come over again, for the third time in their case, to do the developmental assessment. Oh wait, what if my childhood development has changed since 2007? My therapist had better get the records, and she’ll hopefully straighten up about my blindness, as the Leo Kanner House had a blind client several years ago.

I don’t remember where I got it – maybe on a journaling site or in a forum game -, but the question was asked which time you’d travel back to if you could go back with all the knwoeldge you have now. This is an interesting question, as I’ve made quite a few mistakes in my life, or just things I would’ve done differently if I could go back.

Looking at the past seven years in my mental health journey alone, i’ve had a few regrets. The most obvious is of cours emy crisis in November of 2007. What would’ve happened if that hadn’t occurred and I hadn’t been hospitalized? Would I by now be living in a supported housing accommodation, which I was after all being considered for the waiting list for? Would I have had a university degree by now? Most likely not. Besides, the knowledge I have now could not have prevented this crisis. It wasn’t that I could think more than a few hours ahead, so knowing that my crisis would lead to long-term institutionalization, would not have helped. The thing about crises is that people in them can’t oversee the long-term consequences of their actions.

Once I was in the hospital, however, several possible long-term living solutions came by. One was a tiny accommodation in the middle of nowhere which I reected because of its rural location and because the intake people treated me like a freak. Both were irrational argumnts, but with my current knowledge, I wouldn’t go back and get in there, cause what I didn’t know then and do know now, is that the accommodation want bankrupt one or two years later.

Then came the organization my elementary school friend recommended in late 2008. It’s currently quite an established supported housing organization here in the province, but back then, it was relatively new. I had an introductory meeting and was advised to go to an accommodation in a town three hours by public transportation from where my husband lived at the time. I was sent some paperwork, including a list of patronizing house rules and the report from the introductory meeting. The report said that I’d had a psychotic break, and got a few other facts about me wrong. I didn’t want to go to the town far away from my husband, but did for a while consider going t o the accommodation that happens to be in the next or second next town from my current institttion and my husband.

I was at a meeting for autistics yesterday, and this organization was mentioned again. They have an accommodation for autistics in the nearest big city, which obviously they didn’t have back in 2008. They also now have two accomodatioons in that next or second next town. I am now considering asking to have an introductory meeting and possibly intake interview for one of these accommodations again. The accommodation for autistics doesn’t provide 24-hour care, but the two accommodations in the nearby town do.

To get back to the question of going back in time with current knowledge, I would likely go back there to 2008. Back then, I thought I could cope with part-time support, ie. living in an accommodation that had support available only at certain hours of the day. I found the organization too restrictive, but I realize now I need a somewhat restrictive environment Maybe I didn’t if I’d left the institution right in 2008. I’m now kind of afraid that these accommodations will not provide the support I need, but then again, I can only find out by asking.